BENEFITING: Cure JM Foundation
EVENT DATE: May 07, 2017
Marissa Mikos wrote -Zayden is a 5 years old with juvenile dermatomyositis. It took a whole year to get the diagnosis (March 1st, 2015) Zayden could barely walk, he couldn't get out of bed alone. He couldn't get in and out of the car. Stairs were impossible for him. He couldn't hold his head up after awhile. He started losing hair. Choking on food due to muscle weakness in his neck, trunk, legs and arms. He couldn't lift his arms above his head and we carried him everywhere for 6 months. He lost tremendous weight. Going to 2 emergency rooms with concerns and being referred to a neurologist that's wasn't sure there was anything wrong with him because he said he may just be acting out (x-ray, MRI, spinal tap & blood had been done) .... Then being referred to another neurologist at Loyola. He did genetic testing. EKG then referred us to a physical therapist at MarianJoy rehabilitation hospital. Met her for about 5 minutes and bam Zayden was diagnosed. I asked her to write it on a piece of paper because I couldn't even pronounce it for a couple months. Immediately from there we were sent back to Loyola for a muscle biopsy for confirmation of the diagnosis. It did confirm dermatomyositis. They wanted a skin biopsy but we opted out of that since they were similar tests. Zaydens CK was 1427. So weak and so much pain at 3 years old. We were stuck at Loyola for 2weeks so many steroids to control this disease. Methotrexate & folic acid, vitamin d, plus 3 blood pressure medications ivig infusions. Then after they seen improvement and had his blood pressure under control we went back to MarianJoy for physical, occupational, & speech therapy. We were there for another 2 weeks. Zayden was bilateral casted because he couldn't stop walking on his tip toes. He had bad range of motion in his ankles then when we took the cast's off he would walk with his feet outward like a duck. Then we got Afo leg braces! They did him good ! But when we were sent home we still had casting for couple more weeks to flatten his feet and stretch his muscles. Then we got home it was a relief to be home! Hospital beds and chairs weren't comfortable at all. Zayden had therapy 3x a week after being discharged. Then it went to 2x a week's finally this past August 2016 we were discharged completely. Zayden now is doing amazing he still fights high blood pressure and gets his monthly infusion. But the support we receive from the Cure JM community is amazing and we can't wait for our walk! Hope my family and friends can make it! Love always, Zayden & family!